Hi Linda,
I sent you a private message but will answer on the forums as well in case it could help someone else.
All the consent forms are very daunting. They cover all possibilities of potential problems like all drug literature does. It can scare you to death. Don took a very active role in the decision making - he had the last say - which made it easier on me. It sounds like you are the decision maker and so the responsibility lands on your shoulders. Take comfort that NIH knows what they are doing. The #1 hematologist in the world is over that department - Dr. Neal Young. NIH is on the cutting edge and takes every precaution to protect and care for their patients. They are thorough in everything they do as you can see just with the paperwork. And they are also there for any questions and to help with any concerns. I e-mail them all the time - Barbara is wonderful. You will not feel alone as they do everything they can to help with decisions and answer any and all questions.
We always stay at the Hyatt as well. It is the best hotel there and isn't very far from NIH. They do give an NIH discount so be sure to ask for it. It can be convoluted to get to NIH due to the layout of the streets so I'm glad you're taking a taxi. I would leave at 7 or shortly after to get there by 7:30 as it is downtown Bethesda and during rush hour traffic.
I know how hard it is sometimes to keep the faith but you are doing the best you can and that is all you can expect from yourself. As with all of us in this situation - you make the decisions based on the information and recommendations the doctors give you but as you know - ultimately it's all up to the Great Physician anyway so try to take some of this burden off your shoulders. You are never alone.
I hope we'll get to talk soon. I'll do anything I can to help you with this situation.
God Bless,
Sally
p.s. Pity parties are good sometimes!
